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Decoding Your Health

Tuesday’s Science Times devotes an entire issue to the challenges patients face researching their health information. Whether you’ve been diagnosed with a serious illness or are simply trying to make sense of the latest health headlines, you’ll find much of use in this special report called “Decoding Your Health.” Here’s a list of all the stories in the section.

Yes -We have gone from paternalistic, almost secretive, health care information communications which provided too little information to a communication system where we both as professionals and patients are flooded with excessive-too much-information.

Health reporting has increased dramatically in all media formats and the internet provides abundant easy access to medical information ranging from the highly reliable sources to outright dangerous quackery.

Among the most frustrating aspects of all of this-one which erodes credibility in bio-medical science and confuses everyone- is completely conflicting opinions from experts on a wide range of topics.

Yet the information genie is out of the bottle never to go back.

So we ask that medical journalists be as responsible as possible and that bio-medical research become less corrupted and tainted by unholy economic alliances.

We ask that patients and doctors alike be accepting of ambiguity and uncertainty in bio-medical science which in fact is always evolving instead of immaturely insisting on fixed immutable scientific “truths” which is indeed illusory.

The doctor -patient relationship has undergone a radical transformation based on the democratization and explosion of health information. Both health professionals and patients alike are struggling to adjust to this new -but ultimately more mature -relationship.

One of the problems, as I see it, is that consumers are getting “over educated” by the pharmaceutical companies involved in billions of dollars of “Direct to Consumer” advertising to sell the latest drug each year. One half of us who see the ads get convinced we must already have the disease they’re peddling, and the other half start worrying about some day getting it.

I eagerly pored through the links of the Special Health Section and couldn’t believe it. Once again, professional nursing – the sole profession that specifically is concerned with the concept of health, is not mentioned, nor is a single nurse expert cited, a single piece of nursing research referenced, and the contributions of professional nurses entirely ignored.

Take nursing and nurses for granted at your peril. As the cadre of advanced education nurses dwindles, so too, will the number of nurses educated at any level. Practice conditions remain abysmal, and nurses have lost ground in professional autonomy, salaries and workplace protections.

To discriminate repeatedly against the profession which provides about 95% of ALL reimbursed healthcare services (The Commonwealth Fund), is doing a significant public disservice.

Nursing is not a subset of medicine, nor is it an illegitimate apprentice occupation. It is a profession, whose members deserve respect by the media, respect by government and respect by the public. Who will report nursing’s contributions and challenges if not the traditional media charged with providing an accurate picture of health care?

As a nurse, I am accustomed to being discriminated against and being taken advantage of. But I will continue to raise my voice as long as I am able to point these things out because patient morbidity and mortality – and yes, quality of life – depends on the presence of a baccalaureate educated nurse.

That the New York Times perpetuates this discrimination is disappointing and unacceptable.

The internet is a marvelous tool or set of tools to help each of us find whatever we want. Patients are not alone in the difficulty with finding the correct information about any topic. For example, as a physician I thought I could find a new motherboard for my computer. Yes, it is true that information is available but then I tried to build the computer and had to decide on the case, the power supply, the CPU, the graphics card, the operating system, and the how each of these interact. Even this simply problem quickly become extremely complex if I cared that the system would actually work. In the end, I decided paying for the correct advice was more efficient, less costly, less frustrating, and the result worked properly.

Even though we all want to streamline our lives, this may not be possible or even desirable. The decisions are complex and the bases for these decisions are even more complex. We need a physician who will take the time to explain the problems and his/her thinking of these, the role of and limitations to testing, the follow plans; someone who asks about our concerns and answers them to our satisfaction.

Unfortunately, the payment systems rewards testing with CT’s, MRI’s, PET scans and not interaction and service. I cannot describe how often a clinical history and exam defines the plan independent of other tests. The patient-physician interaction rarely can be complete in 15 minutes for anything other than a minor problem. When we, as a society, decide to pay more for patient service, less for testing, and less to insurance executives, we will have a greatly improved health care system.

The fundamental quality needed is respect for the patient, confidence and respect for the physician; this mutually positive interaction is the most healthful place to understand your internet discoveries.

I was recently struck while listening to the lecture of a health care economist who nonchalantly commented that “Americans don’t care about each other” as other societies care about each other. Perhaps this is exactly why we are seeing our financial systems imploding and health care costs rising as government is constantly struggling to impose new rules and regulations that have consistently failed. Search for a physician who will guide you through the internet and mass media maze. This is the best choice.

Medicine is more art than science, more subjective than objective — and half of all physicians graduate in the bottom half of their med school classes. Health is too important to delegate decisions to someone who sees patients in rapid-fire sequence. Even though it takes work and time, every person has to learn enough to be their own second opinion. Get that? YOU are your own best second opinion.

A) Five rules for researching your health. How to navigate in a sea of health information.
A) Response: What if there is a sixth or seventh rule? Researching your wellness, health and illness are all different. It is not navigation that counts but knowing what is important to look for not where to look for something that might not be important.
B) How to make sense of medical studies. What does Frankie Avalon have to do with medical research? Gina Kolata explains.
B) Response: Take a master’s in statisics to learn how easy it is to distort statistics. But more importantly, what is needed is a guide to ethics, an understanding that the funding source is equally important to know and understand and what is not studied or compared could be even more important than what was studied or compared.
C) The exploding online universe. John Schwartz tours health information on the Web.
C) Response: No comment other than to say it is and like most explosions can be a s deadly as helpful.
D) What does “F.D.A.-approved” really mean? Gardiner Harris explains what “F.D.A. approved” means.
D) Response: F.D.A. approved means the F.D.A. approved something. More important is how that approval was made, by whom, who pays them (under and over the table) and on what basis the approval was given. Since F.D.A. approval does not limit the prescribing of a drug (the practice is known as off-label prescribing and according to studies by independent research runs about 15-25% of all prescriptions for F.D.A. approved drugs) for any other use than what the F.D.A. approved the drug for , about one of five prescriptions has no scientific backing for its use. So F.D.A. approval becomes a legal smokescreen to get drugs in wide use whether they are actually effective, more effective, safe or in fact dangerous. 100,000 Americans are reported to die each year due to adverse drug reactions. This figure is a gross under reported statistic.
E) How to find a doctor. Roni Caryn Rabin helps you find Dr. Right.
E) Response: Find 10 prominent directors of service in the specialty needed and ask them who they would use if they were critically ill. And if a surgeon is needed, ask the same question of ten surgical nurses at ten different hospitals assuming you will have the surgery locally.
F) An alternate route. William J. Broad explores the science of alternative medicine.
F) Response: Most articles written for the public on this subject are written with quotes and comments by medical doctors who attack their potential competitors claiming they have little in the way of good science to prove the value of their services. (At this point refer to D) above) where for some strange reason, demands for scientific proof gets lost.) Simple fact is that there are good alternatives and bad just as there are good and bad medical model diagnostic techniques and questionable treatment values. But alternatives that are not based on the medical model are needed to keep both honest, costs down and safety foremost.
G) Making sense of your blood test results. The test is routine, but what the heck is bilirubin (Billy Rubin?)anyway?
G) Response: Certain questions must be asked first. Was the test needed at all? Were the results accurate? Does the test have a history of false positives and false negatives? Will the results alter the decison making process about treatment and outcome? Was a repeat test done to ensure accuracy? Were the results available to the medical doctor at the point when a diagnosis was made? Were the results entered into the medical record for use at that point of diagnosis and later for comparision? Were the results so definitive that they were helpful? Was the patient properly prepped for the test? Was the patient taking any food, supplements or other F.D.A. approved drugs that would/could influence the results? All people should take two years of basis science, two years of basic chemisty, a few years of pharmacology and a few more of nursing, OT, PT, ST, at least three years of medical school coursework and maybe two years of biology if not included anywhere else along with a few years of nutrition and pyschology to ensure they get it correct in this area.
F) Self-diagnosis on the Internet. Follow Denise Grady as she searches for answers about toe pain.
F) Response: One example is not a rule or a good study as is so often mentioned when it comes to alternative medicine. One story is not proof but just one
[un]documented story. Enough said, except today everyone is an author, a consultant, a web designer, a playwrite, etc. Why should not everyone be a physician? One reason is that even after four years of high school, four to five years of medical school, a minimum of two [three] years residency and up to seven for specialty and surgery, and then maybe twenty years of practice (an interesting choice of a word), many medical doctors are finding it difficult to stay abreast of all that is happening in the field of medical care. At the same time, please take a few refresher courses on tort and malpractice law so you can sue yourself if you screw up. This way you can win-win when you lose-lose.
G) Our favorite sources: The Times’s health writers share some of their favorite online and print health resources, and we review a few more.
G) They are their favorites. I am sure they are. They say so. And I am sure there are others, that others would find as favorable. My favorites include MAD Magazine and publications about warfare that include MAD as a public health issue.
H) The points not often made and when mentioned, are mentioned only in passing are wellness and primary prevention.
H) Response: As they are usually less expensive, more fun than waiting in a waiting room, safer and a natural part of life, readers should take a journey into their own wellness and learn about those simple things they can do to start taking their health into thier own hands. As the roadside sign says, “Drive safely. we can wait. Your local undertaker.” , we would add, “Take care of your wellness and health. Sooner or later you will need a medical doctor, but until then, that doctor can wait and when you take your seat in the witing room, you will be a better patient.”

Kudos to all of you for putting together such a useful resource! Although many M.D.’s feel overwhelmed with the amount of information that patients bring to their 7 minute primary care visits, this train has left the station…

As we move towards a more predictive and preventative future brand of medicine in what will almost certainly be a brutally cost-conscious environment, efficient web resources aimed at patients will play a critical role.

Good stuff here, TPP. There are a lot of self-taught “Web Doctors” out there, I.E., patients who attempt to do self-diagnosing, and second-guessing of their actual doctors by reading a bunch of stuff on the Web, so your look at this subject is important.

It would nice to believe that doctors may become more collaborative with their patients in how to treat their illnesses, but only a few confident, open-minded physicians will embrace such an approach, at least in the near-term. And it also requires intelligent, interested patients to make such a thing worthwhile.

As a health information professional, I’m surprised and dismayed that MedlinePlus.gov was not highlighted as an excellent site for the public to visit for answers to any health or medical question. At our non-profit health library for consumers, we recommend it as the best general purpose site – and with good reason.
MedlinePlus.gov covers physical and mental health for all ages, plus drugs, supplements, medical procedures, and diagnostic tests; links you to other reputable websites that address one’s topic of interest; and provides information for users with vision problems or who prefer to read information in other languages (or in lower-literacy English). You can look up medical definitions, locate specialized (or general) care providers in diverse health-care professions, and discover the medical libraries open to the public in your area.
All this is free to everyone and the site has no advertising. It’s truly a wonderful resource. I urge the Times to postscript it to their “Health on the Web” list of useful sites.

Funny that your first article contains the advice (paraphrased): “Find out how you react to information.” I have found out that I am a hypochondriac, and probably should not be websurfing all this medical information, lest I diagnose myself with every disease imaginable.

It’s a bit overwhelming, but it’s what we need, and the NYT has stepped up to the plate to provide a real service to its readers.

The way the economy is going, and the way our government is working, we need to accept that we have to take control of everything we can. We need to be health-educated and healthcare-educated, and that doesn’t mean waiting to get sick, before googling.

I was diagnosed with prostate cancer 18 months ago. I had to find out a lot about treatment options, impotence, incontinence, survival outcomes at different stages with different treatments, and the pros and cons of each- radical prostatectomy, the Davinci method of surgery, radioactive seed implants, external beam radiation, and doing nothing. Then you have to look at where to have it done – Seattle Protate Institute? Mayo? Detroit? Johns Hopkins? I opted for seed implants at my local hospital, where I was lucky enough to have a radiation oncologist and urologist who had been trained in Seattle and who had done almost 1000 procedures with state of the art equipment, including virtual seed placement on a 3-D image of the prostate that allowed them to compute the optimal placement for seeds and the radiation dose to the adjacent tissues as well as to the cancerous areas of the prostate. A year later, my PSA is heading toward zero quickly, I still have sexual function and am not incontinent.

I would say though that my response to the diagnosis was a rational one, and that I never once even considered homeopathic or “complementary” medicine. Get in, get out, kill the cancer and give me back my life. No wishful thinking, only rational decision making. My support group leads me to think that I am not unique, but I am not necessarily representative of the response to a cancer diagnosis either.

The fact is most doctors resent medical googlers. And many patients use Google because they see it as an objective source. We cannot trust what our doctors say anymore. We wonder what they haven’t told us when they just say “take these pills” That is why I am thankful for the internet. It really has demystified doctors knowledge diluted their importance and empowered the patient to take an active role in their own healthcare.

Also maybe we should be funding and spending more money on stem cell research. We are on the verge of curing some horrible diseases. If there was more funding and less restraints, more people wouldn’t need to be suffering needlessly, and spending hours upon hours on the web.

Poster #2 says we’re getting “overeducated” by drug companies. Not a possibility. Do you think for a second that these companies are there for your health? I am sure that patients coming in the door with lots of internet information makes doctors crazy. On the other hand, I know a handful of people who have diagnosed themselves after their doctors ignored flagged blood levels. One example is a friend who had to diagnose her own parathyroid tumor, and so on. My own family doctor, Charles Wohl, once said, “When you’re a hammer, the entire world is a nail.” I have opted out of hand surgery and gall bladder surgery, thank God. Information is never a bad thing. Get your regular check ups, sure, but we all have access to infomation so that doctors can deal with the serious stuff. Look at your own blood tests – nobody is as interested in your own health as yourself. Medical information is widely available to all of us. Take advantage of it. It’s a win-win situation.

As doctors spend less time with their patients, while treatment becomes more complicated, perhaps it is a good thing we have an “overload” of medical information. I was on medication that caused a rare muscle condition called Rhabdomyolysis. Thanks to the Internet, I was able to present a clear medical discription of my on-going symptoms. The doctor could no longer ignore my complaint. Although self-diagnosis can be dangerous, medical information, if used wisely, can benefit the patient as well as the doctor.

Excellent article and excellent comments.
Yes, the amount of health and medical information on the Internet is enormous and, regrettably, mostly misleading, false or inaccurate.
I have been a consultant for several years with a company founded and run by highly qualified physicians, trained at the top university medical centers in the US. The web site is Hlife.info –They even offer online consultations with many excellent doctors –Hlife.info/qa
I hope that this information is useful. Thanks!

The Editor of JAMA put it eloquently more than ten years ago when he said that the web was the world’s largest vanity press. Anyone can publish anything for next to no cost, and too frequently for the sole purpose of making money, not education.

Like democracy, the peer-reviewed literature has problems, but is the best choice now available. The best medical information is freely available to the world at the US taxpayer-funded National Library of Medicine, the National Institute of Health, and the National Cancer center

The media (all media) share in creating the public confusion. Reporters and Editors should stop publisizing press releases, even from prestigious universities. Wait for vetting and publication. Most particularly, do not flamboyantly report epidemiologic risks of food since these are the weakest kind of evidence and this literature is often inconsistant in findings. Scary stories make great leads, but are poor public service.

The times that I have tried to use the web to discover health information for myself – read: input symptoms and get some general idea what the roblem might be – the results have been completely useless. Services that allege to do this only charge for what turns out to be nothing.

If I already know what the problem is or am merely interested in some medical topic, then the web has plenty of information.

Gina Kolata’s article is a must read for everyone, but especially those who take supplements.

If supplements don’t have a double-blind placebo controlled HUMAN clinical trial behind them, don’t take them, because they most likely don’t work. This eliminates about 98% of supplements you see on the shelf in a drug or health food store.

It’s incredible how many people take supplements based on endorsements from supermodels and athletes, or Joe average.

Resveratrol from red wine is a great example. A well-publicized study showed that taking daily the amount found in 20 gallons of wine extended the life of a MOUSE.

Supplements with 1/100 of this amount started showing up in stores after celebrity endorsement, and its flying off the shelves at $30 per bottle. What a waste of money.

There’s absolutely no evidence it works in humans, and it might even be dangerous.

We have gone from assuming we are healthy most of our lives to a medical/industrial complex which now defines us all as pre-sick. Everyone has some test or other which newly lowered standards give us worry. Pre-diabetic. Pre-heart disease. Pre-anything. Worry. Worry. Worry. It is not the internet which has done this, but the medical establishment looking for grants.

I find your articles on health issues to hit the nail right on the old head. I was born with Spina Bifda, and after 51 yrs. of dealing Dr’s and nurses. And the change I have seen over the yrs. is not good. Unless this country makes it mind as to good health care for all, the path down will contiune. I go onto the net and get as many Dr’s outlook on a issues as I can, you may want to add to your list, a site for people with kidney issues. just search Homedialysis Central. This is a site that is a information page plus a message board.

For many years making the right diagnosis with scientific certainty set the tone for medicine. What was once a visit to the doctor became a visit with a referral to a specialist, who then found another problem and made yet another referral. Slowly we began to realize we have unwittingly iintroduced fear into the equation. The more afraid we are that something is “wrong,” the less we can trust and the more isolated we become.

If the role of the doctor is to say, “Geeze, you’ve read all these studies, and they’ve scared you, and they make it hard for you to trust me, right? Well, I just want to reassure you that we’re going to find a way to work our way through this. Don’t be afraid.

It has been heartbreaking to watch my parents run (in their late eighties) from one fearful appointment to another. For them it isn’t the internet that poses the problem, it is the web of specialists each of whom addresses not life but some fearful possibility.

We seem to be hooked on fear, and have forgotten about life somewhere along the line.